Quote:
Originally Posted by earthling
Hi everyone,
New member here. I have some questions I hope I can get help with.
I was diagnosed with autoimmunity in 2011. Of four rheumatologists seen so far two called it Sjogrens and two called it Undifferentiated Connective Tissue Disease. I had very high ANA and SS-A but no dryness; my symptoms were sore joints, fatigue, orthostasis and small-fiber neuropathy.
400 mg/day of Plaquenil completely eliminated the joint pain. I cut it back to 300 a day a few years ago and early this year to 200. As the joint pain did not return I was thinking of cutting it back further, but Im not sure if it is a good idea since I dont know if it is slowing the disease progression. My orthostasis also seemed to improve greatly around the time I started treatment. Would Plaquenil have helped that?
Meanwhile, I saw a neurologist for tilt-table testing two years ago, for a problem of excessive sweating and overheating. He diagnosed dysautonomia probably but not certainly due to autoimmunity. He thought I should get more aggressive in treating the autoimmunity and mentioned IVIG. The rheumatologist I had at the time - whom I trusted the most of all my doctors and who has since retired - did not think it was warranted. I have much less confidence in the new rheumy and do not currently have a neurologist.
The numbness in my toes goes back at least ten years and all that time has seemed either stable or progressing extremely slowly. But recently I realized that its affecting my fingers now also and Im having some new sensations in fingers and toes. Not pain, but definitely something different. Im very concerned now that the nerve damage is getting worse.
If the nerve problems are due to my autoimmune condition, is there any evidence that the progression can be slowed by treatment? Is it possible that the Plaquenil has slowed it and that reducing my dosage was a mistake?
I feel generally pretty healthy and I dont want to mess around with any risky drugs if I dont need them, but if there is good evidence in favor of trying them then I would.
Thanks for reading, any thoughts appreciated.
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I had an autoimmune issue years ago, but diagnosed with RA which was a false positive. The rheumatologist treated me with Plaquenil which relieved all my muscle aches and pains over time. I believe all my issues stemmed from taking high doses of the statin provacol. I'm on a different statin now and experiencing numbness/tingling in both hands and up the back side of my forearms. The rheumatologist says it is not autoimmune and won't prescribe plaquinil. I'm on gabapentin to treat the symptoms only and scheduled for a special nerve clinic with the top neurologist at UAB next year. The gabapentin seems to help slightly but I've only been on it a month at a low dosage. I'll keep everyone posted as my condition changes. Hope some of this info helps in where to turn next. SFN appears to be a quite elusive animal with the number of posts that continue to pop up on this. Neuro talk site. Good luck!